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[03 Sep 2007|09:54pm] |
Well I didn't make the transition very smooth as I just stopped posting in here but, themcdonaldfive.blogspot.com has several posts at this point and many more to come. I'm going to privatize all of the entries here. I'll probably post little bits and pieces about Dakota's past in the new blog as anniversaries come and go but I want to put this chapter behind us. It'll be safe and sound in her baby book if she ever chooses to read a book about the first 18mos of her life.
Dakota's New Blog
Syndicated feed for those on LJ who want to read the new blog.
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[09 Aug 2007|09:44pm] |
Julian started calling me "Mommy" yesterday. It's bittersweet seeing all of his baby tendencies dissapear.
( OT evaluation for private therapy )
( Pictures and videos )
Also, her surgery has been moved to August 31st. There wasn't a way to get both the ENT and GI in surgery at the same time until the end of the month.
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[07 Aug 2007|01:57am] |
We saw our GI this morning. Dakota officially weighed 17lbs 9oz on the same scale which 6wks ago showed her as 19lbs 2oz. Clearly there's a weight loss yet our GI's response to this news was, "She looks great!" "Do you think she's lost weight?" He then went outside to ask the nurse if the scale was working properly. So, essentially, he doesn't think she could have possibly lost weight because she looks so healthy (still got that big belly and fat cheeks). He's extremely pleased that the reflux is under control. We no longer have a chronic cough, retching or any symptoms of reflux at all! For now we're on Zegerid and won't be changing that any time soon. The oxygen needs continue to be worrisome to him however the results of the Nuclear Milk Scan and two Barium Swallows we've had in the past month show that she's not routinely aspirating. He was dissapointed to hear of her recent aspiration pneumonia and found it somewhat ironic that right after having tests done showing she doesn't aspirate she's admitted for aspiration pneumonia.
Obviously something isn't right with her diarrhea and weight loss. In her doctor's words, "she's a knucklehead". That being said, since we are already scheduled to have surgery on the 17th our wonderful GI is rearranging his schedule so that he can be in the OR at the same time as our ENT. Dakota will be having an Upper Endoscopy, Flexible Sigmoidoscopy and some biopsies taken in addition to her already scheduled trach stoma closure. They'll be looking for any sort of inflammation and enzyme deficiencies that might be causing the current problems. If everything looks normal, he mentioned a trial of pancreatic enzymes to see if that improves things.
Our allergy testing came back and everything is normal. She has a slight sensitivity to eggs but nothing worrisome. We now have no clue what she reacted to at the end of June but she has Epi pens now in case she has another reaction.
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[03 Aug 2007|10:45pm] |
Sometimes I don't know why I let myself get so frustrated about Dakota's delays. She's currently scooting around under the table trying to eat crumbs from dinner and jabbering "babababa". Maybe if we just put her food on the floor she'd actually eat it! Clearly she's not suffering at all. She has her moments when she wants to do things her body just simply can't do but for the most part, now that she can scoot, she's much less frustrated. Who knows how long scooting will suffice for her but it is unbelievably nice (and annoying at times) that she can get to her toys and books. She will sit and play by herself for over an hour looking up occasionally to make sure I'm still close by.
She's still very quiet most of the time but this week she figured out how to talk into a tube. She takes apart her nebulizer pieces, sticks the big tube in her mouth, starts jabbering away and then looks up with this huge grin on her face when she hears her distorted voice.
Looking at the clock I guess I should go try and put her back to bed. For some reason I'm always very laid back when it comes to her "schedule" if you can even call it that. Whenever we're admitted into the hospital I always get the question "what is her feeding schedule". Quite frankly, we don't really have a schedule. Whenever her brother and sister sit down to eat is when she eats. I know she typically takes a nap in the morning and two in the afternoon but I couldn't tell you a time. If we're not at the house, she usually doesn't sleep and you'd never know she missed a nap. Bedtime? Usually we have some play time just the two of us after Madison and Julian go down and then it's off to bed for the peanut. She frequently takes a "nighttime nap" and then wakes around this time and plays until Raff and I go to bed.
Dakota's been doing so many new things every day lately. We have a ton of those wooden puzzles with the little pegs. She finally figured out how to grab the pegs and pull the pieces out but hasn't quite gotten the hang of putting them back in. She tries but she's not there yet. And the stacking toys, she can finally stack her stars!
We saw the pediatrician yesterday and Dakota's still not gaining weight. We're averaging about 4-6 diarrhea diapers a day. We see the GI on Monday and I'm really hoping she's at least 17lbs which will put us at a 2lb loss since we saw him 6wks ago. I don't know what to do to get her to grow and she's even on O2 right now. Her pulmo has noticed a trend where her growth slows/comes to a hault when she comes off O2 and then she grows a lot when we put her back on. No such luck with that this time. I'm sure the scooting does burn some calories but not enough to account for her loss this time.
Her oxygen needs during the day have been much better the past 48hrs. She's still desatting frequently but she's coming back up on her own without O2 most of the time. Nighttime is still a struggle for her. She's back to her crazy 2am tricks where she bounces between the 90's and the 50's.
She's moved from the table to the other side of the living room and found Julian's shoe. Apparently it's really amusing to hold onto the shoe lace and shake the shoe around. She's got the cutest smile in the world! All I have to do is smile at her and she starts giggling. She's rubbing her eyes though so good time for her to go back to bed. Oh and she got her fourth one year molar today! Still only two bottom teeth other than the molars.
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[31 Jul 2007|10:21am] |
We have officially started physical therapy! This week we just have one session but starting next week we'll be going 2x a week to the therapy gym. It's been about a month since Katie worked with Dakota and she has so much more motivation to move now than she did at her evaluation. She's actively trying to pull up and crawl which is going to make therapy much easier. Starting next week we'll be taping Dakota's left foot to help her learn to keep it flat.
The only problem right now is that Dakota's oxygen needs are significantly up and we don't really know why. She was acting totally fine and in no distress at all but when she went down for her morning nap after breakfast she dropped her sats to 75% and wouldn't come back up. Bit by bit we turned her oxygen up and at 1L she was only 87-89%. After watching her for about an hour and giving her an extra albuterol treatment, I finally called the pulmonologist. He had us haul out our big concentrator and turn her up to 1.5L which popped her up to 92-93%. After another hour we weaned her back down to 1L and since we came home from PT I've been able to turn her down to 1/2L. I don't know what's going on, she sounds totally clear and is moving air well. She's due for another breathing treatment in a few minutes and maybe then we can go back to our normal 1/4L.
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[28 Jul 2007|04:26pm] |
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We're home! She is needing 1/4L 24/7 today but the attending agreed to go ahead and send us home since it might take several days to weeks before we're back on 1/8L only at night. Madison and Julian were thrilled to see Dakota in her crib. I let them get up from naps early and told them to go peek in our bedroom. They walked in there and started screaming Dakota's name which subsequently woke her up in a very bad mood.
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[27 Jul 2007|06:05pm] |
Despite the frustrations of being in the hospital, Dakota has been quite the trooper. She's wanted to get down on the ground several times to scoot around for her toy bar. She isn't too pleased with being "on a leash" and kept getting caught at the end of her cords so we had to get extensions for her tubing. I guess being in the hospital so much has taken it's toll on Dakota. She'd much rather play with a bandaid, syringe, IV tubing or saline bullet than any rattle or baby toy I could give her. Last night she was scooting around and her nurse and I were laughing at the utterly awful yet amusing way she's found to move. She started to try and scoot under the crib, practically folding her body in half. We looked under the crib and there lay a syringe.
She's been an absolute goof ball when she's feeling well. I sat her up in her crib and was messing with her feeding pump. Next thing I know I turned around and she had her legs hanging over the side of the crib and her tongue was sticking out trying desperately to lick the bars. I guess you have to find some way to entertain yourself when you're in a crib all of the time.
I
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[27 Jul 2007|04:56pm] |
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Well it's 5pm and while the words "discharge this afternoon" were uttered early this morning, that's no longer an option. She has periods of being perky but in general is still very fatigued. They took her off of O2 this morning and as soon as she started to drift to sleep she dropped into the 80s and wouldn't come up so we had to put her on O2. Once she was awake we took her back off and she did relatively well while she was playing on the floor but she tired quickly. She's back on oxygen now during her second nap of the day.
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| Dakota's 17mos old! |
[27 Jul 2007|10:22am] |
Yesterday we had our modified barium swallow along with an upper GI. She cooperated much better for the swallow study than she did the previous time and we focused mainly on pudding consistency (she actually liked the barium), and crackers dipped in barium. She appears to have a very delayed swallow which is why she gets wet sounding as she eats. Food pools in a certain area in her throat (don't remember the term) and it takes her a while before actually swallowing it. She had one episode of penetration and apparently there's disagreement between the doctors as to whether she actually aspirated or not. The only odd thing she does is several times we'd see barium start going down her esophagus and them shoot back up before it ever entered the stomach. For the most part however she seemed to protect her airway excellently. The upper GI showed her Nissen is still holding and that despite her refluxing constantly into the pouch formed by the Nissen she doesn't actually reflux past the Nissen itself.
She was thrilled to get a cookie yesterday during the study and quite dissapointed when I took the bag away from her. They initially said that we were only to let the OT/SLP feed her and no longer do oral feeds at home but we had an OT consult this morning and she taught me how to look for cues that Dakota might be fatigued and done eating. She said that if we follow her cues and stick with the food consistencies we tried together today that she thinks we'll be fine.
I swear I've learned more about Dakota's eating/swallowing/cues this week than in the past 17mos of her life. The OT noticed as soon as she walked in the door that Dakota was hungry based on her vigorous sucking on her pacifier and her smacking her lips. As soon as we got the spoon out Dakota was thrilled. She ate several spoons of chocolate ice cream, two spoons of apricots and then tasted her cookie a few times. The OT said she has really good lip closure but poor tongue lateralization when it comes to purees. She also commented almost immediately on her low muscle tone and said that she noticed Dakota, while anxious to chew, has very weak jaw muscles which make that difficult.
I've heard mixed information as to whether we'll go home today or what the plan is. One doctor said we'll be discharged today and the other doctor seemed to imply that they'd like 3 days worth of IV antibiotics. Her temperature seems up slightly from her normal but until it hits 100.4 she doesn't technically have a fever and right now she's only 99.9. Breathing wise she sounds much better. She's definitely needing O2 100% of the time at about 1/8L during the day and we had to bump her up to 3/4L last night.
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[26 Jul 2007|11:21am] |
Well Dakota's doing better this morning in some ways. The breathing treatments throughout the night really seemed to help with her cough and she didn't run a fever after her last dose of tylenol (I expect that to come back this afternoon as is Dakota's typical pattern). They've turned her O2 down to 1/2L and she's satting 95%. Her cough this morning is nasty sounding and getting worse as the afternoon approaches. Her BMP looked much better this morning. Her blood sugar was only 98 and her potassium was up to 4.8 thanks to the extra potassium she got last night.
The plan is to do another barium swallow this afternoon before they let her eat orally again and then we'll just watch her and see what she does.
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[26 Jul 2007|01:06am] |
Just a quick update to say that we had our eye appointment this afternoon and Dakota has an astigmatism though not severe enough to warrant glasses. We go back in 6mos to see how things look.
We then saw our PT who met us in the ER as we were getting checked in. Now I'm sitting in a nice big new room in the respiratory unit of our children's hospital.
( For those interested in the long story... )
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[24 Jul 2007|12:32pm] |
I don't think I mentioned but Dakota learned to scoot on her butt while we were at camp last week. She's not very fast and it's not all that great for her muscles but it has cut down on her frustration level some which is a good thing in my opinion. We start our physical therapy this week and hopefully we'll see Dakota soar.
Yesterday we had our evaluation with Anne who's going to be our new speech therapist. I've never had someone ask me so many questions about Dakota's medical and feeding history. We literally spent over an hour just talking about everything that's gone on to get a feel for why she's so scared of food. She watched Dakota eat and was extremely impressed with how well she's doing now compared to when I talked with her a few weeks ago and she wasn't eating anything. We may not be getting any nutrition orally but I cannot tell you guys how much progress she's made despite that little fact.
She got inside Dakota's mouth, felt the roof of her mouth, watched how her tongue moved, listened to her congestion, all kinds of things. She explained so much to me that I'd never heard before. She talked about how missing the last 10wks in utero greatly affects a child and their ability to cope with different situations the way a normal person would. When you or I see a roller coaster for instance we know how to prepare ourselves to get on it. For Dakota when she sees a "roller coaster" (eating in this instance) she goes into fight or flight mode and has a surge of adrenaline because her body has no idea how to deal with all of the feelings she's experiencing. She said that most likely her fear is more associated with the bottle and that her rejection of solid foods is more a learned behavior which we'll work through using modified behavioral therapy.
She explained to me why Dakota's having trouble keeping food in her mouth. She said that the middle part of the tongue is the most important part because that's the part that forms a bowl and draws the food from the front of the mouth to the back. In a normal person when your mouth is closed the middle part of your tongue rests on the roof of your mouth. Dakota however has an extremely vaulted roof due to being intubated for so long. When she relaxes her tongue never touches the top of her mouth to get the stimulation that it needs. As a result whenever anything touches the middle part of her tongue she immediately withdraws her tongue which results in food coming out of her mouth. We'll do different oral motor exercises to help desensitize her tongue and she also wants us to switch from NUK pacifiers to Soothies if we can get Dakota to take them.
It was so great to hear her talk about how well Dakota's doing verbally. She was very impressed with how much noise she was making after just 4mos without a trach. She also commented on Dakota's pincer grasp and a few other fine motor skills she's already mastered. We'll start seeing her every Monday and Friday starting August 10th.
Today we saw the allergist for the first time. We had some allergy testing done to look primarily at Soy, Dairy, Oats, Rice, Barley, Egg White, Egg Yolk, and a few other things that I can't remember. She said that she's had very little luck in identifying allergens that simply cause diarrhea as that's more of an intolerance than a true allergic reaction. Since Dakota does always get a slight rash whenever she's having a lot of problems she said we might see something show up slightly positive on the test but not to get my hopes up. The reaction Dakota has to eggs is much more classic and should produce a positive. She did go ahead and give us four epinephrin pens to keep with Dakota at all times in case she has another reaction. She mentioned possible skin testing depending on the results of the RAST test and also more invasive testing that Dr. Zwiener might want to look into if her tests come back negative. I was really dissapointed to see that Dakota weighted 17lbs 0oz fully dressed today at her office. I don't know how to get her to gain weight.
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[22 Jul 2007|08:45pm] |
We got home yesterday afternoon and have been busy getting our lives back in order since then. The kiddos were awesome in the car which I never imagined would happen. All in all the week was very enjoyable and relaxing. Madison loved her class and counselors from day one. Julian was quite uncertain and cried the first few days when we left but by day three he was walking right up to the door and taking his Crocs off. Dakota enjoyed playing in her class and loved her counselor Prickly Pear but being in an unfamiliar environment and away from me for a couple of hours at a time was difficult for her. She ended up sleeping close to 20hrs a day the entire week.
I'm having computer problems so this will be short. Dakota's doing great with her eating. She's not eating enough to cut back on her tube feedings at all but she's showing so much interest. She's willingly putting a spoon in her mouth with pureed food on it. She'll eat all sorts of finger foods. Since yesterday she's even been trying to drink from a bottle, sippy and straw cup. Unfortunately the only thing that actually makes it into her stomach are some of the finger foods as all liquid and pureed food seems to be pushed out immediately. We have the first part of our feeding therapy evaluation tomorrow and I really feel like we're at a great point to start working more intensely on her oral motor skills.
Raff starts a new job tomorrow and could definitely use some prayers.
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[14 Jul 2007|06:43pm] |
Our crazy week of appointments and tests is now over! We saw the pulmonologist this afternoon. We're planning to begin Synagis again in September/October. We spent a while discussing whether or not it would be beneficial for her to receive a 3rd season of shots. There is one camp who feels that it's unnecessary to give shots to a baby/toddler of 2yrs old even when they are oxygen dependent. Then the other camp feels that despite having a more established immune system by the age of 2yrs, "extreme cases" like Dakota just have too much stacked against them to risk a case of RSV. So, the verdict is, we're getting the shots again through April.
Despite another year of monthly shots there is good news. We finally get to cut back on our Albuterol and are using it only as a rescue medicine now. After our surgery in August we'll try and cut back on Pulmicort to just once a day. The official results of the sleep study should be ready in 1-2wks but based on what he'd already heard he wants us to stay on O2 when sleeping.
(All of that was written yesterday and I ran out of time to post it.)
This morning Dakota woke up with a noticably sunken fontanelle. She was peeing fine and didn't look dehydrated at all. She's been acting much more irritable lately and I even commented this morning to Raff about how she seemed floppier than normal. Needless to say just to make sure everything was fine before we head off on our trip tomorrow I took her to the pediatrician's after-hours clinic. I really should have just gone to the ER and will probably do that from now on. Seeing a doctor who's never met Dakota before and doesn't have her medical history in front of him makes the trip useless. He ended up asking me what tests I wanted and I just had them do a CMP. He said she looked hydrated to him so he had no explanation for why her fontanelle was sunken in so he said it must be normal. I was surprised that the CMP came back good. Her Potassium was 5.2 we're aiming to keep it right around 5.0 and her CO2 was 26 so it's gone down a little since we increased her meds which is what we wanted. I don't know why she seems so rag-doll like today but when we get back next week we'll talk with a doctor who actually knows Dakota and decide what to do.
I almost forgot. Yesterday Dakota was sitting on the floor playing with her Easter eggs (one of her favorite toys). She got excited and clapped! I wasn't sure she actually knew what she was doing but today at the doctor's office she did it again two times! It's so precious because she gets this really excited look on her face when she does it.
We're gone for the week now!
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[13 Jul 2007|12:46am] |
We saw our pediatrician this afternoon to catch her up on everything that's going on with Dakota. She sees all of the reports and writes all of the prescriptions I call in for in regards to therapy and then we see her every 2mos to get all of our ducks in a row. Dakota's really been so healthy (I sometimes forget this since we spend so much time at the hospital) that we have only made a handful of sick visits and that's only been for ear infections primarily. Today she was 28in and 17lbs 2.5oz. Our weight gain has been less than stellar this year but thankfully no one is concerned since we know it all goes back to her kidneys and now her food sensitivities. The pediatrician strongly recommended I look for private therapy since we've made such little progress developmentally over the last 4mos. She was very pleased to hear I already have things lined up for that to start in the next few weeks.
Other than that, we're now heading to a Pediatric Allergy, Asthma and Immunology specialist as soon as we can get in. The diarrhea isn't letting up even when we avoid foods we know for sure Dakota's sensitive to. Other than wheat, sugar, oats and rice we suspect corn is also on the list since corn flour seems to do the same thing to Dakota as everything else. Hopefully the new doctor will be able to shed some light on why this poor child can't seem to tolerate anything but breastmilk!
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[12 Jul 2007|07:58am] |
Since we're going to be gone almost all day I thought I'd hop on here and go ahead and tell everyone about the sleep study before I get busy with the kiddos and forget.
We got there around 7:30 and basically just chilled for a while. I visited with the RT who was doing the study and got to talking with one of the other RTs who has a little boy same age as Dakota with a feeding tube and kidney issues. (It seems anytime you meet someone who's kid has a feeding tube there's an instant connection). We started trying to hook her up and she was less than cooperative. By 9:30 she was asleep and at 10:00 we actually started the test.
Most of the night she did great. The first half was without O2. Her CO2 was in the 40's, breathrate 30's and saturations primarily in the low 90's dipping to high 80's on occasion. All pretty good and on the low side of acceptable for her. I fed her so we could see a more accurate picture of her reflux/desats during sleep. She was definitely bouncing around more for the first hour after getting fed but still stayed primarily low 90's. Then she went into REM sleep around 2am and almost instantly her breathing became shallow (totally normal) and she started dropping to the 60's (not so normal). We had actually decided to keep her off of O2 longer than we were supposed to because she was doing so well but when she started dipping we decided to put her back on O2 around 3am. All she needed was 1/8L and she never dipped again after that point.
It was rather uneventful. I didn't ask the tech about the EEG portion and he said he didn't notice any particular apneic episodes (wasn't expecting any). We'll get the official report when Dr. Glomb reads the study in the next 2-4wks but the tech agreed that they're unlikely to take her off of O2 and did comment that he was really surprised she dipped so low during REM based on how well she did without O2 the rest of the night. So we wait and for now, we're on O2 at least while sleeping. I had hoped that perhaps we'd be able to take our vacation next week without any tanks, concentrators or pulse oximeters but I guess we'll just lug everything with us.
They weren't able to do the hypoxic challenge that Dr. Scalo was wanting in order for Dakota to fly in September so we'll have to have it done at a later point when the Dell Children's sleep lab is finished.
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[11 Jul 2007|04:50pm] |
One year ago today Dakota had her tracheostomy. On that day we never dreamed we'd even be free of the ventilator, much less the trach by the following year. We were prepared for at least 2yrs attached to a machine and yet here we are with Dakota playing happily on the floor breathing entirely on her own. I don't think I ever could have survived 2 whole years with a trach. Perhaps life would have been easier if I had a child with few secretions but I don't. In just 6wks we'll officially be done with everything related to our trach. No more hole in the neck. No more unattractive scar. All signs of our 8mos with the trach will be almost eliminated.
Dakota played well with her therapists this morning. She is really enjoying dipping her pretzel sticks into sauces but heaven forbid you try and dip it for her. She's not terribly efficient but I'm sure with practice she'll get there. We're somewhat at a standstill it seems with getting her to crawl. She's learning new things just nothing really significant. She can slide onto her tummy from sitting up but then gets mad instantly because she can't get back up to sitting. She can sit and pivot around slowly in a circle. She can also sit and push backwards using her arms. In short, it's very frustrating not making any progress and hearing the therapists talk about how they don't know why she can't get onto her hands and knees or hold the position if you put her there.
Tonight we have our sleep study. I'm sure it'll be very exciting (note the sarcasm). I know nothing about sleep studies. None of my kiddos have ever had one. I kept the pulse oximeter on Dakota all last night to get a feel for what her normal pattern is at home so we'll see how it compares to being in the sleep lab. I had my hopes up that perhaps at our pulmonology visit on Friday we'd be taken off of O2 but, I'm not holding my breath after last night. She just can't sleep, digest food and maintain saturations. I'm sure the day will come but it's not here yet.
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[09 Jul 2007|09:43pm] |
A couple of days ago Dakota started saying "mama" in addition to finally saying her "n" and "b" sounds. She still has no idea what she's saying but I'm still very impressed that after only 4mos of being able to make noise she's already babbling so much.
We had her modified barium swallow this morning and it was next to impossible to get her to take anything by mouth. The handful of swallows she did take had penetration but no actual aspiration. Nothing changes in what we're doing but it is a relief as our SLP had some concerns about her swallowing safely due to sounding congested whenever she eats or drinks.
We schedule Dakota's stoma closure for August 17th at 8:30am. We're scheduled to spend the night on the surgical floor but I'm holding out hope that maybe that won't be necessary and we can go home the same day.
The kiddos are all getting very excited about our trip this next week. Madison asks constantly when we're going to Pine Cove and she wants to know what we're going to do when we're there. She's gone back and forth between wanting Julian in her class and wanting to be alone with other big kids. Dakota is going to get to be in her appropriate class and will have her very own counselor who will take care of her and handle her feeds. I'm sure she'll have a blast as she's becoming more and more social.
Once we get back from camp Dakota will start going to Sunday school at church! She'll have a volunteer that helps with her specifically so that she can be a part of everything. Right now we're going to put her in with the crawlers and we'll see how she handles it. I am thrilled to be able to sit through an entire service with Raff. This last Sunday was the final straw. We walked into the service, sat down 3min before it began and right as the band was starting to warm up Dakota and I were walking out.
( My very flexible baby )
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